Our little super hero came in to the world at 33 weeks 3 days when my body started failing due to HELLP Syndrome and severe preeclampsia. I went to the ER, at 33 weeks, with severe back pain. I thought I was just dehydrated, but after being transferred by ambulance to a hospital that was more prepared for preemies, we found out that I had HELLP Syndrome. The pain I was feeling was my liver swelling and my kidneys were not functioning well.

Abigail fought hard, and thanks to her many many prayer warriors, she was able to stay in me three more days while she got two rounds of steroids to help her lungs. On the third day they decided it wouldn’t be safe to wait any longer and they took us in for the c-section. [Read more…]

Our Sweet Baby Kate has been a miracle fighter from the beginning. Kate is the result of 6 years of intensive infertility treatments and is an IVF baby. The pregnancy was filled with complications including a subchorionic hemorrhage and severe hyperemisis. I had sudden onset of preeclampsia. My blood pressure was fine one day, but the next day was 210/170. Needless to say I was immediately admitted for induction and magnesium sulfate. Kate was born on March 5, 2009 at 37 weeks 1 day gestation.

I was able to hold her for a few minutes, but she was taken to the NICU for CPAP because she was having a hard time breathing. Once the neonatologist had a chance to examine her more closely, he determined she was surfactant deficient. She was given surfactant and put on the oscillator. She was only on it for 12 hours, and then went straight to room air!

Kate battled sepsis and high levels of magnesium and bilirubin while she was in the NICU. But she did great, and we were able to take her home after 2 weeks, 1 week before her due date. She was on an apnea monitor until she was 6 months old.

At 4 years old, she is the light of our life. She is smart, funny, kind, caring, and has no delays. You would never know she had such a rough start.

We are so grateful to the amazing doctors, nurses, and therapists that worked with us to help her heal and bring her home.

Mama was diagnosed with severe pre-eclampsia at 27+6 weeks, and was told she would be on bed rest until at least 34 weeks. Then her kidneys started failing. She was airlifted to a hospital with room for Jack, then prepped for an emergency c-section. Jack was born in the wee hours of March 25, with incredible APGAR scores of 8 and 9! (http://becoming-we.blogspot.ca/2013/03/jack-cameron.html) He spent 70 days in the NICU (where he was referred to daily as “feisty”) as a feeder and a grower, then came home on oxygen 11 days before his due date. He is the apple, orange, and banana of his mom’s, dad’s, and grandparents’ eyes. He’s doing so well. At 5 months adjusted, 7 actual he is wearing 6-9 month clothes, sleeping through the night, eating chunks of frozen everything, and is even on the growth charts for actual age! Every single day is an adventure with this guy.

Hailey B. ~ Super Hero Alias: Radiant Hailey Joy

Age: 2 years
Weight at birth: 1lb 8 ozs
Weeks gestation: 29 weeks, 6 days
Time in the NICU: 114 days

Diagnosis, complications, surgeries?

I had a very sudden onset of severe pre-eclampsia. There was a very big possibility that I was not going to make it. My daughter was breech and I had to have an emergency c-section. We did not know until she was born that she had a Trachea Esophageal Fistula, which is a hole in her trachea and esophagus. The day after she was born she had surgery to insert clips to close the hole. Also she was born with Esophageal atresia, which is her stomach and esophagus were not connected so her body was not getting any nutrition to grow. She had to gain 3 lbs before she could have the surgery. She had a picc line inserted to feed her. It took 8 weeks before she could have the surgery to have them sewn together. Two days after that surgery she was getting air in her chest and had to be opened a 3rd time to fix one of the clips. She had over 10 blood transfusions and has tiny scars on her hands and legs from having so many ivs and needles put in her. She also will suffer from GERD for the rest of her life.

Why Should Your Children Be Recognized as Preemies of the Year?

My little Hailey Joy is such a blessing. She has overcome so much, more than most people experience in a lifetime. So many times I was told that she might not make it through the night but my little Hailey had other plans. She proved everyone wrong. She wanted to live. God put a fire in my little girl’s heart to keep fighting at every cost. She is a very strong-willed little girl, which she had to be to push through having 3 surgeries and so many blood transfusions and being on a ventilator for 3 months. She had so much fight in her that they had to keep her bundled up very tight most of the time because she would pull at all of the tubes trying to get them out. Once she had been pulling at the tubes so hard that she managed to pull the tube for the ventilator out just enough that her heart stopped. I will never forget the image of nurses rushing in and her body going grey and limp. But God gave her back to me and she continued to fight to live. I was told that she would be in and out of the hospital for the first year of her life but my daughter is so strong that she not once had to return to the hospital. She has such a wonderful personality and she loves everyone. She walks up to strangers all the time and wants to give them hugs and kisses. She makes my life so interesting. She will be 3 soon and though she still deals with reflux and not gaining weight as fast as what the doctors want her to; she still thrives in all she does. She does everything in her own time. She is now talking very well and it amazes me to hear her put sentences together like asking me “mommy how are you doing today?” I am always taken back to when she was on the ventilator and she would cry and it would be a silent cry. My miracle baby is truly a wonderful blessing and has persevered through it all. I can’t wait to see what the Lord has in store for such a strong, tenderhearted, little girl.

Using Three Or More Characteristics of a Super Hero, Please Describe Your Child

Resilient-she has overcome so many obstacles.
Strong willed-When she puts her mind to something she does it.
Tenderhearted-She loves people and is very attuned to how people are feeling. If she sees me crying, she will come sit in my lap and tell me everything is going to be ok and she will wipe away my tears.
Brave-She has endured so much and she also is such a little daredevil. She loves going down slides backwards and being thrown up into the air by her daddy and jumping and climbing.

Yamile’s Story

In 2001, Yamile Jackson, PhD, developed severe pre-eclampsia. In order to save her life and her son’s – Zachary had to be delivered prematurely, weighing less than two pounds. Three weeks after his birth, while he was still in the NICU, Tropical Storm Allison flooded Houston and shut-down all power to his hospital including his life-support equipment. His parents and the NICU staff kept him alive “by hand” for 9 hours until he was safely evacuated. Yamile held him in kangaroo care while her husband Larry and nurses took turns “bagging” him. Eventually doctors found hospitals where they could safely evacuate the 79 babies in the NICU.

An Aha! Moment

During this traumatic experience, Yamile prayed for the opportunity to help babies on Zachary’s behalf. Every day for at least 10 hours she was at the hospital personally providing proper intervention strategies, individualized care, and therapeutic touch for her fragile baby. The nurses taught her that her presence was invaluable. When she was not kangarooing she used her hands to provide effective neonatal developmental care practices in comforting, nurturing and healing her convalescent baby. She promised Zachary that his pain and struggle to survive were not going to be in vain. She knew she would use her talents and experience to make the NICU stay more comfortable for other babies.

A Parent’s Healing Touch

While the nurses had to care for multiple babies at the same time, Yamile gave her undivided attention to Zachary. However, at the end of each day the agony of leaving her son was too difficult to bear. She kept asking herself, “How can I help Zachary when I am not here?” and wished she could leave her scent and loving touch so her baby would not feel alone or abandoned. Using her background and PhD in ergonomic and human factors engineering, she created two ergonomic hands, Zakys, to simulate her and Larry’s hands. These arms continued giving “undivided attention” to Zachary until his parents returned in the morning. Upon Zachary’s departure from the hospital after 155 days in the NICU, the nurses requested that she make the Zakys to help all the babies in the NICU. Thus, her company was born.

Zachary’s story not only inspires everyone at Nurtured by Design, the company she founded, but his story of survival has also been featured in international media, articles, documentaries, and even the made-for-TV movie 14:Hours which aired on TNT.

Helping Parents Provide Kangaroo Care More Comfortably

Yamile “kangarooed” Zachary for 6-7 hours each day in the NICU and is a strong advocate of Kangaroo Care. She is a certified Kangaroo Care Professional and a facilitator of the Certification Course provided by the US Institute for Kangaroo Care. As with her creation of the Zaky, she designed the Kangaroo Zak™ with the sole objective of facilitating hands-free, safe, prolonged, and effective kangaroo care sessions in the hospital and later on at home. The Kangaroo Zak™ consists of soft, breathable, stretchy and strapless top that wraps around the torso of a parent and closes on the side with an adjustable zipper to hold a baby in the correct position. The ergonomic device accommodates medical connections, helps infants maintain their temperature, and gives parents a way to hold their child easier so kangaroo sessions can last longer.

A Small Business with Big Impact

Inspired by the premature birth of her son, Yamile founded her firm Nurtured by Design which manufacturers Zakys and Kangaroo Zaks™ to raise the standard of developmental care that hospitals and parents can provide to children in their care. Yamile explains, “Babies only grow, heal, and develop the brain when they are in deep sleep. We are successful in providing an ergonomic environment that promotes sleep, effective parental intervention, and help the staff minimize interruptions, disruptions, and unscheduled nursing interventions.” The results of an independent clinical research suggest that The Zakys significantly improve self-regulation and significantly decrease apnea and bradycardia of prematurity, thus improving neurological development. And, many fellow parents can identify with the connections and bonding that occurs between parent and child during skin-to-skin contact or Kangaroo care. We look forward to hearing more about innovations from Nurtured by Design!

Ava M. ~ Super Hero Alias: Ava Bean

Age: 3 years
Weight at Birth: 1 lb 4 oz
Weeks Gestation: 24 weeks
Time in the NICU: 101 days

Diagnosis, complications, surgeries?

Ava’s mommy had severe pre-eclampsia and Ava had to greet the world a little bit earlier than was planned. When Ava was just a couple of days old, she had to have PDA surgery on her heart, but she did great and recovered quickly. We were very fortunate that this was the only “major” surgery Ava had while in the NICU. Thankfully Ava didn’t have very many complications. Mainly just trying to get her oxygen levels stabilized to bring her home.

Why should your child be recognized as “Preemie of the Year”?

Ava’s motto has always been “I may be tiny, but I’m strong!”. And this motto has held true from the day she was born. She came out fighting the moment she came out of my womb, even though she was a micro-preemie. Looking and listening to Ava, you would never know she started out life way before she was supposed to. Ava Bean is our Superhero because she has shown us that no matter how you started your life, it is how you live it. She may only be three, but that girl has more life in her than anyone I know. She lives it fully and with such fervor. She has never let any setbacks keep her down. Ava dances her way through life, always with a smile on her face.

Sara S. ~ Super Hero Alias: Sarh Bear

Why should your child be recognized as “Preemie of the Year”?Sara has overcome such a rough start in life. She was born early due to my having severe pre-eclampsia. She was lucky in that the steroid shots I was given worked on her tiny little lungs. She came out only needing room air for about 24 hours, then no breathing support after that. She did have complications in “catching up” and learning to be a “normal” kid. With the help of wonderful therapists and hard work on her part, she has overcome her slow and early start in life and is a happy, healthy, and typical 3 year old. [Read more…]

pinterest

Hand to Hold is a nonprofit 501(c)3 parent support organization and information and resources provided here do not intend to take the place of the relationship between a patient and personal physician.

Footer #1 Widget

This is an example of a widgeted area that you can place text to describe a particular product or service. You can also use other WordPress widgets such as recent posts, recent comments, a tag cloud or more.

Footer #2 Widget

This is an example of a widgeted area that you can place text to describe a particular product or service. You can also use other WordPress widgets such as recent posts, recent comments, a tag cloud or more.

Footer #3 Widget

This is an example of a widgeted area that you can place text to describe a particular product or service. You can also use other WordPress widgets such as recent posts, recent comments, a tag cloud or more.